Pediatric Care Must Make Room for a Child’s Life

James Robinson describes Nadav’s illness as an encounter with the limits of both medicine and parental control. Born with heterotaxy and a single ventricle, Nadav underwent three surgeries before age four, the first at five days old. None could repair his heart; they were, Robinson says, “sophisticated hacks” to stabilize his circulation and perhaps carry him into adolescence, when a transplant might be possible.

That prognosis made ordinary parental uncertainty acute. Robinson did not know whether the operations would succeed, whether Nadav would live, or how he would tell Nadav’s brothers if he died. But his son’s condition also made him newly attentive to the improbable fact of normal development. He describes the cilia on an embryo that move amniotic fluid and help position proteins directing organ formation. In Nadav’s case, he says, impaired cilia created erratic flow and malformed organs in a process that unfolded within roughly three hours.

Robinson came to regard doctors not as masters over this uncertainty but as people working within it. The physicians he valued were candid about what they did not know. One gave the family a boundary that mattered: Nadav was the hospital’s patient, but he was their son. Medicine could treat his circulation; it could not decide what kind of life he should have.

That left Robinson and his wife, Tali, responsible for showing Nadav the world alongside treatment. They pushed strollers through New York, took the children to a favorite North Carolina beach, and visited Legoland and the San Diego Zoo. After Nadav’s third surgery, they chose to take a longer trip to Australia, despite the risk and after extended conversations with his doctors. Australia was a place of family significance: Robinson’s mother was from there, and Tali had lived there for four years.

The trip ended in crisis when Nadav developed a clot two days before the family was due home. His emergency operation lasted 10 hours, including seven and a half on bypass. Yet Robinson’s account does not treat the decision to travel as a mistake that treatment should have prevented. A child’s life, in this view, could not simply wait for a future in which medical risk disappeared.

At the Children’s Hospital at Westmead in Sydney, Nadav was the sickest child in the ward. A doctor told Robinson and Tali that improvement was not expected; Nadav might hold steady, or he might deteriorate beyond what the team could treat. Robinson says he broke down. Tali instead asked whether the outcome was up to Nadav himself. When the doctor agreed, she answered, “Well, I can live with that. I trust him.”

Robinson understood that trust not as confidence in a medical outcome but as faith in Nadav’s own capacity to grow and heal. The intensive-care team conveyed a related idea when new doctors asked the family for patience while they got to know him. Robinson took their point to be that clinicians could not themselves make his son heal. Their job was to give him the best opportunity to do so, which required recognizing him as more than a failing circulation.

One doctor made that recognition concrete by taking Nadav outside while he was intubated and critically ill. It took 45 minutes to move his equipment from the room, down the hall, through the elevator and into the open air. Robinson remembers the wind in Nadav’s hair, leaves and flowers, his brothers playing, and the family together. The outing was not pity or palliative care, he says. It was an acknowledgement that feeling the outdoors, being with family and participating in ordinary life belonged to healing because they belonged to being human.

Nadav eventually spent three months stranded in Australia before a procedure in Philadelphia could help him. A specialized team flew from the Children’s Hospital of Philadelphia to transport him back; the family was told that if he died en route, the aircraft would land at the nearest airport. The procedure removed him from critical condition, but fluid in his lungs kept the family in Philadelphia for another six months. He relearned to walk, talk, eat and smile.

The family applied the lesson from Australia in Philadelphia. Each morning, they walked to a herb garden in a distant ward and picked fresh oregano for Nadav’s lunch, his favorite. They wanted him to feel like a child again because they believed that mattered to his recovery. Eventually, a last-ditch procedure involving his lymphatic system cleared his lungs. Robinson says the doctors did not fully understand the system they were treating. Nadav still had a single ventricle, and his body had developed new circulatory connections in an apparent attempt to rebalance itself. The adaptation was extraordinary, he says, even if it could not last.

The genetic finding mattered to Robinson because of the conclusion he refused to draw from it. An explanation for Nadav’s condition did not turn him into a child who should have been prevented, selected against or otherwise avoided.

A molecular genetics report from a research study found that Nadav was apparently homozygous for a likely pathogenic DNAH5 variant, a result the report said was consistent with heterotaxy. It also stated that the particular variant had not previously been reported in the literature. Robinson calls this scientific proof that his son was “one of a kind.”

The report also led to a discovery about Robinson and Tali: he says that each carried the exact same mutation on their H5 genes. Their genetic counselor suspected they might share a common ancestor from four or five centuries earlier. Robinson gives the discovery a bitter irony. He had felt from the outset that he and Tali were meant to be together; now, he says, their relationship had reunited a centuries-old mutation that harmed their son’s heart.

But he rejects the counterfactuals the finding might invite. Not marrying, not having children, or cherry-picking embryos in search of one without a defect would have meant not having Nadav. For Robinson, that absence—not Nadav’s existence—is what he finds unbearable to imagine.

Five months after the family returned home, Nadav died. Robinson says that, holding his son that night, he felt pain, sadness and grief, but most strongly pride. Nadav would not reach the milestones parents conventionally anticipate: graduation, marriage, children. Yet Robinson felt that in five years his son had given the family as many moments of pride as many parents experience in a lifetime.

The hardest remaining task was telling Nadav’s brothers. Robinson connects that moment to childhood conversations with his own father about stars: some still visible in the sky may no longer exist, and there is nothing between them. Robinson had always feared that nothingness, especially because his father’s own father died when he was 16. He could not solve that fear for his sons. He told them the truth as best he could: their brother had died.